Person-Centered Planning, Guardianship, and Supported Decision-Making

Spring in Charlevoix, MI

In March 2017, the Administration on Community Living sent out a request for comments on “Draft Principles for a Person-Centered Approach to Serious or Advanced Illness”. The announcement said:

“At ACL, we believe that every person should be able to make choices and to control their own decisions, regardless of their age, disability, or illness. [emphasis added] ACL, in consultation with stakeholders from the aging and disability communities, has drafted a set of principles to guide our work in this area, and to enhance existing programs and services related to serious or advanced illness for older adults and people with disabilities.”

What’s wrong with this picture? When you read that first sentence do you hear fingernails scraping on the blackboard or is it just me? Why is the ACL conditioning their request for public comments on the agency’s belief that age, disability, or illness do not impair anyone’s ability to make and control decisions? If you read further in the Draft Principles, you will find that this belief is reinforced and is the basis for proposed policy promulgated by the federal government.

If you live in the reality-based world of families of people with severe and profound physical, cognitive, or behavioral disabilities, you know that “belief” does not cause our loved-ones to have abilities they, in fact, do not have, any more than pixie dust allows them to fly. People with disabilities who are able to make and control decisions for themselves, with or without support from others, should be protected and encouraged in their right to do so. But acknowledging that some people do not have this ability, is the first step in protecting them from neglect, abuse, and exploitation.

Below are comments from VOR, a national organization that “advocates for a full continuum of high quality care and human rights for all people with intellectual and developmental disabilities (I/DD)”. As a member of the committee that wrote these comments for VOR, they are also my personal views.

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VOR Comments on “Draft Principles for a Person-Centered Approach 
to Serious or Advanced Illness” proposed by the 
federal Administration on Community Living

May 12, 2017

VOR is a national nonprofit organization that advocates for a full continuum of high quality care and human rights for all people with intellectual and developmental disabilities (I/DD).

VOR members include families of people with severe and profound life-long disabilities. Many of our family members with I/DD live in Intermediate Care Facilities (ICFs/IID) and other congregate settings such as skilled nursing facilities and smaller community group homes, while others live at home with their families or in supported living situations. Many function at the level of infants or toddlers or have complex behavioral problems that may endanger themselves or others. Some face serious and advanced illnesses similar to those of the aging population. As the lifetime survival of people with these severe disabilities is extended through improved medical care and other services, more and more people with severe to profound I/DD will face these challenges.

Our disabled family members are a small minority of those served in Medicaid-funded programs but their needs are great. For them to survive unharmed requires comprehensive care and understanding of their intensive needs. Most are unable to make decisions for themselves in some or all aspects of their lives. Many have legal guardians appointed by state courts. Most of the guardians are also family members or friends who know the individuals well and are committed to protecting their interests.

VOR supports the availability of a full spectrum of services and residential options appropriate to the needs of the individual including larger congregate settings as a necessary component of the long-term services and supports (LTSS) system, along with Home and Community Based services that support people in a variety of living arrangements.

Principles related to planning and decision-making:

Comment #1: “Supported decision-making principles and practices should guide those who are helping individuals who need assistance with planning and decision-making. Individual goals, decisions, and known views should take priority. “

Supported Decision-Making is a movement based on a controversial ideology that promotes the idea, that with almost no exceptions, all people with I/DD can make their own decisions with support from an informal network of advisors. With SDM, the advisors are not court-appointed nor do they bear any responsibility for ensuring the success of outcomes. SDM proponents view the “Right to Fail” as an important freedom, regardless of the individual’s ability or vulnerability.

The primary goal of SDM is to move away from “substituted decision-making”, where the guardian makes decisions for the incapacitated ward. This approach would then, in fact, be doing what SDM proponents criticize: substituting the judgment of the incapacitated ward with the judgment of a “support team”. SDM is not, however, a suitable replacement for court-ordered and monitored guardianship for those unable to make or communicate decisions for themselves.

VOR does not oppose the use of Supported Decision-Making for all who voluntarily wish to use methods promoted by SDM advocates. All decisions must rest with the individual or the legal guardian as authorized by a state court and it must be understood that guardianship procedures are available to those who need them, regardless of their participation in SDM activities. As such, there is no reason to give up guardianship in order to use Supported Decision-Making.

For people who have appointed health care advocates or have made other arrangements for others to represent them if they become too ill or too disabled to make their own decisions, advance directives should be honored in the person-centered planning process. The appointed representatives should be allowed to make the decisions that the individual has asked them to make.

Comment #2: “All parties should presume that people with real or perceived cognitive, communication, or intellectual disabilities are able to make decisions.”

The presumption, that all people with cognitive, communication, or intellectual disabilities are able to make decisions, is simply false. The underlying causes of these conditions often result in a person being unable to make or communicate decisions in all or some aspects of their lives. In many instances complex decision-making that takes into account possible harmful consequences is impaired. There must be assurances that the individual’s interests are protected and that they are not subjected to abuse, neglect, or exploitation because of their disabilities.

An analysis of the Americans with Disabilities Act regulations by the U.S. Department of Justice concludes that, “…public entities are required to ensure that their actions are based on facts applicable to individuals and not on presumptions as to what a class of individuals with disabilities can or cannot do.” [This is found on Page 193 of Appendix B, a section-by-section analysis Title II of the ADA regulations ; see also The DD News Blog,"What does the ADA 'Integration Mandate' Really Mean?"]

Presumptions that people can make decisions when there is clear evidence that they cannot is a disservice to vulnerable individuals that exposes them to unacceptable risks.

Comment on Principle #4: “Individuals need access to services that enable them to manage their conditions and symptoms, live in the setting of their choice, and be integrated into the community….”

Facilities that provide a higher level of care for people with severe and profound I/DD such as ICFs/IDD and skilled nursing facilities are part of the system of Long Term Services and Supports and should be included in this statement.

These are technically considered institutional placements, but in a 2015 Survey “Giving Voice to Families and Guardians”, VOR found that people living in these facilities and smaller community homes were about equal in the degree of engagement with their communities. Respondents reported that their family members enjoyed an average to high degree of interaction with the broader community away from their ICF and Non-ICF homes (“integration”). [Page 11]

VOR supports person-centered planning principles that acknowledge the full range of needs and abilities for people with I/DD. We support family decision-making consistent with The Developmental Disabilities Assistance and Bill of Rights Act:

“Individuals with developmental disabilities and their families are the primary decisionmakers regarding the services and supports such individuals and their families receive, including regarding choosing where the individuals live from available options, and play decisionmaking roles in policies and programs that affect the lives of such individuals and their families.”

- The Developmental Disabilities Assistance and Bill of Rights Act of 2000, 42 USC 15001(c)(3)(2000)

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See also, "Issues to Consider Regarding Guardianship and Supported Decision-Making" from VOR and "Understanding Guardianship and SDM" from The DD News Blog 

Understanding Guardianship Part 2: The Michigan "Preventing Guardianship" Project, 2002 - 2004

Two of the goals of the 1998  Michigan “Task Force on Guardianship and Conservatorship…” were seemingly contradictory:  to reduce the number of unnecessary guardianships and  conservatorships and to guarantee “an appropriate number of qualified and concerned guardians”. The Task Force report did not include how the Task Force would ascertain that a guardianship was unnecessary or the number of guardianships that were actually found to be unnecessary in the course of reporting on guardianships in Michigan. 

State Courts complain about the lack of guardians available for people who have no willing friend or family member to take on the responsibility of guardianship, at which time the courts are impelled to turn to professional state or corporate guardians. It is my guess (I’m still looking for definite answers to this question), that there are more abuses in the public guardian system because the relationship between public or state guardians and their wards is less personal and is more fraught with conflicts of interest. Could it be that the aggressive approach of disability advocates to discourage potential family guardians from seeking guardianship has the effect of pushing courts into using less desirable professional and state guardians? By always speaking of guardianship in a pejorative way and by portraying the desire to protect a disabled family member with guardianship as wanting to take away the person's rights, advocates may exacerbate the problem of state courts not having enough guardians available to protect people who have no one else to help them. 

Here is an example of a campaign in Michigan that was supposedly launched to reduce guardianships but was turned on families and others close to people with developmental disabilities to shame them into never seeking the protections of guardianship.

Advocates for people with developmental disabilities, including Michigan Protection and Advocacy Services (MPAS) and the ARC Michigan, had been leading a long-term campaign to dissuade parents and other family members from using Michigan’s guardianship law to acquire decision-making authority for their developmentally disabled loved-ones who cannot make decisions for themselves. Some of the advocates’ activities were funded by the Michigan Developmental Disabilities Council with federal funds under the Developmental Disabilities Assistance and Bill of Rights Act (The DD Act).

From 2002 – 2004, the Michigan DD Council awarded a grant of $200,000 to Washtenaw Association for Community Advocacy (a local ARC chapter) and Michigan Protection and Advocacy Services for the “Preventing Guardianship” project. Although the stated purpose of the grant was to reduce the number of guardianships in Michigan, it was clear from the grant proposal that the project leaders philosophically opposed guardianship for people with developmental disabilities, even those with the most severe disabilities. Promoting their philosophy was central to the “Preventing Guardianship” project. 

Families were subjected to anti-guardianship activities, including public meetings that were supposedly held to give information on alternatives to guardianship, but were in reality for the purpose of proclaiming the evils of guardianship and shaming families into believing they would be depriving their loved ones of their civil rights by contemplating guardianship.  This is despite a Michigan guardianship law that protects developmentally disabled people from neglect, exploitation, and abuse. The law contains extensive protections against unwarranted and overly restrictive guardianships. By undermining state law and ignoring DD Act policy that makes developmentally disabled individuals and their families, not advocates, the primary decision makers, the DD Act-funded project may have resulted in making people with DD more vulnerable to neglect, exploitation, and abuse and families less equipped to protect them.

Public agencies and organizations were also targeted to persuade them to adopt practices and position statements that reject the use of guardianship and proclaim that it is a denial of civil rights. The expectation was that organizations that provide supports to people with developmental disabilities “…will change policies and adopt position statements that reflect an attitude and philosophy recognizing that guardianship is a denial of self-determined lives, civil rights, and that alternatives should be used.”

Parents and other family members were confused and often offended by the advocates unwillingness to acknowledge that some people with DD are not capable of making some or all decisions for themselves. Especially offensive was the accusation by advocates that family members seeking guardianship were allowing the worth of their loved-ones to be diminished by having a court declare their disabled family member incompetent. There were also attempts to exaggerate the difficulty of getting guardianship in the Probate Courts by statements from advocates who said the process was expensive, difficult, and exhausting and should be avoided at all costs. In fact, Michigan Probate Courts are usually family-friendly and most parents obtain guardianship without an attorney. Some Probate Courts offer help to families before a guardianship hearing that includes helpful references to the law and other educational materials on their Websites. As long as the person who needs a guardian is eligible for SSI, there are no court fees. 

Groups opposing guardianship by family members who accept federal funds under the DD Act with enthusiasm, usually reject DD Act policy that makes developmentally disabled individuals and their families, not advocates, the primary decision makers regarding the services and supports they receive. Ignoring DD Act policy and undermining state law that protects developmentally disabled people from neglect, exploitation, and abuse should not have been rewarded with DD Act funds

Michigan’s law for guardianship for people with developmental disabilities: start here and navigate forward to other sections by clicking on the navigation arrow. 

The DD Act : Policies and Principles Through the Looking Glass

Recent posts on the DD Act  - an in-depth look at the DD Act and how it helps but also harms people with developmental disabilities.

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The DD Act “Policies” apply to all programs, projects, and activities funded under Title I of the Act. The principles that are the basis for policies are listed in the DD Act and are similar to the “findings” in the DD Act in that they include statements that are inconsistent with the definition of developmental disability. 

People with DD present a wide spectrum of abilities and disabilities and individuals vary greatly in their degree of functional limitation. Many of the statements of principle fail to acknowledge these differences and assume abilities that many do not have.

While most of the principles listed in the DD Act are an accurate reflection of the needs and circumstances of people with DD and their families, many are merely assertions based on wishful thinking and false generalizations about people with DD. They reveal an unwillingness by policy makers and their advisers to acknowledge the full scope of developmental disabilities.

Many people with DD have been unjustly excluded from participation and inclusion in their communities. An admirable goal of the DD Act is to correct this injustice. No less important, however, is the injustice of limiting access to specialized services and living situations that many people with DD need and prefer for both their survival and enjoyment of life. Because the DD Act policies do not identify these preferences or promote their availability, a part of the DD population is excluded from consideration in the DD Act. Policies that fail to recognize diversity among people with DD, often result in unnecessary controversy, pitting one faction against another, rancorous infighting, and harm to the people who are supposed to be helped. 


Many people with DD will never be fully capable of independence, self-determination, productivity, and full inclusion and integration in the community, even with every imaginable support that might be offered. Their right to services and support appropriate to their individual needs is confirmed by the DD Act Bill of Rights . The DD Act findings, purpose, and policies, however, do not assure that these rights will be respected. 

Because DD Act programs rely on the inaccurate assertion that all people with DD have the potential to be fully capable adults and integrated into “the community”, program activities are necessarily limited to those that promise to transform people with DD into economically productive and self-reliant citizens or at least improve their image. The Act lacks a commitment to people for whom these goals are not fully achievable.

One of the selling points to policy makers for spending money on DD Act programs, is the claim that people with DD and their families do not need or want expensive specialized services that may not result in full inclusion and integration into the community. Whether or not this is true, it is an appealing way to market programs. Add to that the admonition by federally-funded advocacy groups that using public funds to support services that are not promoted by the DD Act, may violate the rights of people with DD. The rationale for this claim is that specialized services that are used primarily by people with disabilities are inherently discriminatory, because they separate people with disabilities from non-disabled people. Even when the people served and their families fully support and participate in decisions assuring that services are appropriate to the needs and preferences of the individual, it seems to make no difference to these advocates.

Providing a rationale for policy makers to eliminate costly (but necessary, for many) programs while advancing the "rights" of people with disabilities must be music to the ears of state politicians looking for justification to balance their budgets on the backs of those most in need. A perfect example of this is happening in Maine where the state is poised to slash services to severely disabled adults in the name of independent living.

It is worth repeating that  the DD Act does not fund direct services to people with DD unless the services are incidental to DD Act program activities, nor are programs funded by the act ultimately accountable to or responsible for providing the services that people need.

 

DD Act Policies annotated:

POLICY.—It is the policy of the United States that all programs, projects, and activities receiving assistance under this title [Title I of the DD Act] shall be carried out in a manner consistent with the principles that—…

The first policy or principle listed in the DD Act is this:
 
1. individuals with developmental disabilities, including those with the most severe developmental disabilities, are capable of self-determination, independence, productivity, and integration and inclusion in all facets of community life, but often require the provision of community services, individualized supports, and other forms of assistance;
 
This disregards the definition of developmental disabilities that includes people with functional limitations in any or all of the areas listed here. It supposes that much of the DD population is not worth mentioning. It tends to exclude people with severe intellectual disabilities and those with behavioral disabilities with the most severe manifestations of those conditions.

2.   individuals with developmental disabilities and their families have competencies, capabilities, and personal goals that should be recognized, supported, and encouraged, and any assistance to such individuals should be provided in an individualized manner, consistent with the unique strengths, resources, priorities, concerns, abilities, and capabilities of such individuals;

3.   individuals with developmental disabilities and their families are the primary decisionmakers regarding the services and supports such individuals and their families receive, including regarding choosing where the individuals live from available options, and play decisionmaking roles in policies and programs that affect the lives of such individuals and their families;

This means that individuals and their families are of primary importance in determining the services and supports that individuals receive. Federally-funded advocates and DD Act programs do not determine individual needs.

4.   services, supports, and other assistance should be provided in a manner that demonstrates respect for individual dignity, personal preferences, and cultural differences;
 
5.   specific efforts must be made to ensure that individuals with developmental disabilities from racial and ethnic minority backgrounds and their families enjoy increased and meaningful opportunities to access and use community services, individualized supports, and other forms of assistance available to other individuals with developmental disabilities and their families;
 
6.   recruitment efforts in disciplines related to developmental disabilities relating to pre-service training, community training, practice, administration, and policymaking must focus on bringing larger numbers of racial and ethnic minorities into the disciplines in order to provide appropriate skills, knowledge, role models, and sufficient personnel to address the growing needs of an increasingly diverse population;
 
7.   with education and support, communities can be accessible to and responsive to the needs of individuals with developmental disabilities and their families and are enriched by full and active participation in community activities, and contributions, by individuals with developmental disabilities and their families;
 
This is true with the qualification that “communities”, even with the best of intentions, may not be able to adequately serve everyone, depending on the nature and severity of the person’s disabilities and the resources available.

8.   individuals with developmental disabilities have access to opportunities and the necessary support to be included in community life, have interdependent relationships, live in homes and communities, and make contributions to their families, communities, and States, and the Nation;
 
Stated without qualification, this is simply not true. There are plenty of examples of communities that do not provide access to opportunities and necessary supports that are adequate to serve people with DD.

9.   efforts undertaken to maintain or expand community-based living options for individuals with disabilities should be monitored in order to determine and report to appropriate individuals and entities the extent of access by individuals with developmental disabilities to those options and the extent of compliance by entities providing those options with quality assurance standards;
 
Yes, this is very important. If monitoring were given the attention it deserves, it would likely become more clear that a full array of options must be available to serve people with DD.

10.  families of children with developmental disabilities need to have access to and use of safe and appropriate child care and before-school and after-school programs, in the most integrated settings, in order to enrich the participation of the children in community life;
 
This is true, but it should use wording from the Americans with Disabilities Act regulations on integration: ...access to...“the most integrated settings appropriate to the needs of the individual."

11.  individuals with developmental disabilities need to have access to and use of public transportation, in order to be independent and directly contribute to and participate in all facets of community life; ...
 
The lack of accessible public transportation is a real barrier to participation in all kinds of activities. Non-public forms of transportation are also important, however, as long as it gets people to where they need to go. Independence and contributing in all facets of community life involve a lot more than public transportation, although overcoming the lack of transportation is a major hurdle.

12.  individuals with developmental disabilities need to have access to and use of recreational, leisure, and social opportunities in the most integrated settings, in order to enrich their participation in community life.
 
Again, using the phrase from ADA regulations, people with DD need to have access to the most integrated settings appropriate to the needs of the individual  and a full array of options, recognizing that all settings are not appropriate for all individuals.

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[This post has been revised several times over the last week. I do not mean to confuse readers. I am just trying to get this right...JB]

The DD Act Purpose : Promoting DD Act Goals

This is an annotated version of the “purpose” of The Developmental Disabilities Assistance and Bill of Rights Act of 2000 with my comments. The way the purpose is stated affects the meaning and interpretation of the DD Act, for better and for worse. [See this section (Sec.101b) of The DD Act in its regular form and format here.]

PURPOSE.—The purpose of this title is to assure that individuals with developmental disabilities and their families participate in the design of and have access to needed community services, individualized supports, and other forms of assistance that promote self-determination, independence, productivity, and integration and inclusion in all facets of community life, through culturally competent programs authorized under this title, including specifically—

[The overall purpose of the DD Act is to promote self-determination, independence, productivity, integration, and inclusion in community life for people with DD, to assure participation in the design of promotional activities by individuals and their families, and to assure that individuals and their families have access to services, supports, and other assistance that promote the purpose of the DD Act. The activities promoted are those stated by the federal mandate with the allocation of funds going to DD Act programs. The DD Act does not provide direct funding to pay for services to individuals or their families except when this occurs incidentally in DD Act program activities. The DD Act does not contemplate how the purpose of the Act applies to people with developmental disabilities who, because of their disabilities, are unable to achieve the goals that are being promoted.]

To continue, “…including specifically —”

State Councils on Developmental Disabilities in each State to engage in advocacy, capacity building, and systemic change activities that— 

• are consistent with the purpose described in this subsection and the policy described in subsection (c); and 
• contribute to a coordinated, consumer- and family-centered, consumer- and family-directed, comprehensive system that includes needed community services, individualized supports, and other forms of assistance that promote self-determination for individuals with developmental disabilities and their families;    

[Note again, that the “comprehensive system” is to promote the goals described in The DD Act, without mention of the possibility that individual goals may differ from those described.]

Protection and Advocacy systems in each State to protect the legal and human rights of individuals with developmental disabilities;

University Centers for Excellence in Developmental Disabilities Education, Research, and Service— 

1. to provide interdisciplinary pre-service preparation and continuing education of students and fellows, which may include the preparation and continuing education of leadership, direct service, clinical, or other personnel to strengthen and increase the capacity of States and communities to achieve the purpose of this title;

2. to provide community services— 

• that provide training and technical assistance for individuals with developmental disabilities, their families, professionals, paraprofessionals, policy-makers, students, and other members of the community; and
• that may provide services, supports, and assistance for the persons described in clause (i) through demonstration and model activities;

3. to conduct research, which may include basic or applied research, evaluation, and the analysis of public policy in areas that affect or could affect, either positively or negatively, individuals with developmental disabilities and their families; and
 
4. to disseminate information related to activities undertaken to address the purpose of this title, especially dissemination of information that demonstrates that the network authorized under this subtitle is a national and international resource that includes specific substantive areas of expertise that may be accessed and applied in diverse settings and circumstances; and

Funding for— 

• national initiatives to collect necessary data on issues that are directly or indirectly relevant to the lives of individuals with developmental disabilities;
• technical assistance to entities who engage in or intend to engage in activities consistent with the purpose described in this subsection or the policy described in sub-section (c); and
• other nationally significant activities.

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While we are on the topic, here is a breakdown of funding for DD Act Programs for Fiscal Year 2014, just to give an approximate idea of the amount of federal money spent on DD Act programs:

(Dollars in millions) 

State Councils on Developmental Disabilities                                      $70.692

Developmental Disabilities Protection and Advocacy                             38.634

University Centers for Excellence in Developmental Disabilities            36.674

Projects of National Significance                                                              8.821

Total Developmental Disabilities Programs:   $154.821

Detailed budget information on DD Act programs is available on the Website for the Administration on Intellectual and developmental disabilities (AIDD).

The DD Act : "Findings" vs. Facts

The “Findings” of Congress listed in The Developmental Disabilities Assistance and Bill of Rights Act of 2000 [the DD Act ] are statements that presumably establish the need for advocacy, legal protections, research and other activities funded by the Act. Among the findings of Congress, however, are statements that are inconsistent with the defining characteristics of people with developmental disabilities. 

By definition, an individual with a developmental disability has a severe and chronic lifelong disability that results in substantial functional limitations in at least three major life activities. This population includes a spectrum of people ranging from those with severe physical limitations who have the full mental capacity to communicate and make decisions for themselves to those with profound physical and intellectual disabilities and high medical needs, as well as people with severe behavioral problems that may compromise their own safety and that of others. When any part of this spectrum is ignored or marginalized, the activities funded by the DD Act can result in harm based on false generalizations and a desire to avoid showing developmental disabilities in a “negative” light.

My sons, who are 30 and 39 years old, are at the most severe end of the spectrum of people with DD. I am particularly sensitive to attempts to minimize the severity of their disabilities to make them appear more capable than they are in the hopes that they will be more easily accepted or that legislators will be more willing to allocate funds for their care and support. Their inherent worth as human beings does not lie in proving that they have a capacity to be productive or independent. To deny the severity of their disabilities does them no favors and increases the likelihood that they will not get the care that they need and that public policy decisions will be made without consideration of the full range of disabilities among the DD population.

Congress has been selective in what it chooses to “find” to justify federal involvement in advocacy for this vulnerable population and the type of advocacy that it will fund.

Here is a the first finding that is listed in the DD Act:

“…disability is a natural part of the human experience that does not diminish the right of individuals with developmental disabilities to live independently, to exert control and choice over their own lives, and to fully participate in and contribute to their communities through full integration and inclusion in the economic, political, social cultural, and educational mainstream of United States society…”

While many people with DD have limitations that may be overcome with appropriate supports, others will not be able to overcome their functional limitations any more than they can wish away their disabilities. To include this statement without qualification as a “finding” has contributed to the controversial activities of some DD Act-funded programs that do not acknowledge the full range of disabilities and confuse “group rights” based on false generalizations about people with DD with “individual rights” that are protected by law.

Many of the findings of Congress do, in fact, accurately reflect the state of the system of services and care for people with DD over the full range of disability:

• individuals whose disabilities occur during their developmental period frequently have severe disabilities that are likely to continue indefinitely;
• individuals with developmental disabilities often encounter discrimination in the provision of critical services, such as services in the areas of emphasis (as defined in section 102);
• individuals with developmental disabilities are at greater risk than the general population of abuse, neglect, financial and sexual exploitation, and the violation of their legal and human rights;
• a substantial portion of individuals with developmental disabilities and their families do not have access to appropriate support and services, including access to assistive technology, from generic and specialized service systems, and remain unserved or underserved;
• individuals with developmental disabilities often require lifelong community services, individualized supports, and other forms of assistance, that are most effective when provided in a coordinated manner;
• there is a need to ensure that services, supports, and other assistance are provided in a culturally competent manner, that ensures that individuals from racial and ethnic minority backgrounds are full included in all activities provided under this title;
• in almost every State, individuals with developmental disabilities are waiting for appropriate services in their communities, in the areas of emphasis;

Here are more “findings” regarding families and communities and their role in caring for and supporting people with DD:

• family members, friends, and members of the community can play an important role in enhancing the lives of individuals with developmental disabilities, especially when the family members, friends, and community members are provided with the necessary community services, individualized supports, and other forms of assistance; [In my opinion, this does not go far enough in emphasizing the importance of families in the system of care and not just to “enhance” the lives of people with DD. Without the care, support, monitoring of care and services, financial support, and advocacy of families, the system would probably collapse.]
• current research [as of 2000] indicates that 88% of individuals with developmental disabilities live with their families or in their own households;
• many service delivery systems and communities are not prepared to meet the impending needs of 479,862 adults with developmental disabilities who are living at home with parents who are 60 years old or older and who serve and the primary caregivers of the adults; [these figures have probably increased substantially since 2000 with the aging of the caregiving population, the limitations on resources, and the poor quality of alternatives to remaining in the family home.]
• the public needs to be made more aware of the capabilities and competencies of individuals with developmental disabilities, particularly in cases in which the individuals are provided with necessary services, supports, and other assistance; [The public should also be aware of the diverse needs of people with DD and the importance of providing a full range of services, housing, and programs to meet their needs.]
• as increasing numbers of individuals with developmental disabilities are living, learning, working, and participating in all aspects of community life, there is an increasing need for a well trained workforce that is able to provide the services, supports, and other forms of direct assistance required to enable the individuals to carry out those activities;
• there needs to be greater effort to recruit individuals from minority backgrounds into professions serving individuals with developmental disabilities and their families.

Finally, Congress makes a giant leap in declaring that,

The goals of the Nation properly include a goal of providing individuals with developmental disabilities with the information, skills, opportunities, and support to—

• make informed choices and decisions about their lives;
• live in homes and communities in which such individuals can exercise their full rights and responsibilities as citizens;
• pursue meaningful and productive lives;
• contribute to their families, communities, and States, and the Nation;
• have interdependent friendships and relationships with other persons;
• live free of abuse, neglect, financial and sexual exploitation, and violations of their legal and human rights;
• achieve full integration and inclusion in society, in an individualized manner, consistent with the unique strengths, resources, priorities, concerns, abilities, and capabilities of each individual;…

People with DD have varying degrees of ability and also vary in their capacity for making informed choices and decisions. Many, if not most people with DD, will not be able to fully or even partially overcome their disabilities, whether or not they are presented with opportunities, information, and support. “Skills” that allow someone to live independently, contribute to communities, achieve “full integration”, etc. are based on ability and by definition people with DD have major functional limitations. Many people find ways to compensate for disabilities in one area with abilities in another.  Accommodations and support may make these goals achievable for many people, but to make a sweeping generalization, without qualification, that the “goals of the Nation” are to “provide” people with abilities they may never have is both arrogant and ultimately harmful to people most in need of care, support, understanding, and protection.

I want everyone to “live free of abuse, neglect, financial and sexual exploitation, and violations of their legal and human rights”, but to presume that this can be achieved by providing individuals with severe disabilities with the skills to overcome their disabilities is not rational.

The DD Act : Defining Developmental Disability

To understand any piece of legislation, it is important to know how terms are defined and applied in particular situations. The DD Act of 2000 defines developmental disability, but your state may define it differently. In any programs under the DD Act, the federal definition is the one that should be used. Most state definitions that I have come across are identical to or close to the DD Act definition.

The term developmental disability has evolved over the years from one that included specific conditions - either “mental retardation” [now known as “intellectual disability”] or conditions closely related to “mental retardation” including cerebral palsy, epilepsy, autism, and dyslexia. Eventually, developmental disability was defined in functional terms, so that anyone whose disability results in substantial functional limitations in 3 or more areas of major life activity that is manifested before the age of 22 is a person with DD. It does not necessarily mean that the person has an intellectual disability or a condition related to intellectual disability although most people with severe intellectual disabilities are likely to also fit the definition of DD. [See the history of the act.]

This is the definition of developmental disability under the DD Act of 2000:

Title I — Programs for Individuals with Developmental Disabilities
 
Subtitle A — General Provisions
 
SEC 102 Definitions

DEVELOPMENTAL DISABILITY.—
 
A.  IN GENERAL.—The term “developmental disability” means a severe, chronic disability of an individual that—

    i.    is attributable to a mental or physical impairment or combination of mental and physical impairments;
    ii.    is manifested before the individual attains age 22;
    iii.    is likely to continue indefinitely;
    iv.    results in substantial functional limitations in 3 or more of the following areas of major life activity:

• Self-care.
• Receptive and expressive language.
• Learning.
• Mobility.
• Self-direction.
• Capacity for independent living.
• Economic self-sufficiency; and
• reflects the individual’s need for a combination and sequence of special, interdisciplinary, or generic services, individualized supports, or other forms of assistance that are of lifelong or extended duration and are individually planned and coordinated. 

B.  INFANTS AND YOUNG CHILDREN.—An individual from birth to age 9, inclusive, who has a substantial developmental delay or specific congenital or acquired condition, may be considered to have a developmental disability without meeting 3 or more of the criteria described in clauses (i) through (v) of subparagraph (A) if the individual, without services and supports, has a high probability of meeting those criteria later in life.

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Other programs and services not covered by the DD Act may base eligibility or participation on a specific medical diagnosis, the income of the individual, or a combination of these or other factors.

What is the Developmental Disabilities Act and why does it matter?

[The links to DD Act programs no longer work, but that does not mean the programs have been disappeared by the current administration. Here is another link that is current that should lead you to the same information. JRB, 7/19/18]

In my experience, most families of people with developmental disabilities have either never heard of the DD Act or have only a vague notion of what it is and how DD Act programs affect them.

One of the more surprising facts about the DD Act is that it does not fund direct services to people with developmental disabilities. Funding for DD Act programs may incidentally provide services to people with disabilities and their families through, for instance, pilot programs or training and education, but funding is primarily focused on advocacy, “systems change”, research, and support for organizations and agencies that promote the goals of the DD Act.

The Developmental Disabilities Assistance and Bill of Rights Act of 2000, a.k.a. the DD Act, is a federal law that grew out of “mental retardation” laws from the 1960s that were designed to improve conditions of care in state institutions and expand opportunities for people who historically faced exclusion from schools and many other community activities.

Information on the history of the DD Act and the programs that it currently funds is available on the website for the Administration on Intellectual and Developmental Disabilities. The AIDD is part of the Administration for Community Living (ACL) under the U.S. Department of Health and Human Services.

DD Act programs include: 

• State Councils on Developmental Disabilities that are “…federally funded, self-governing organizations charged with identifying the most pressing needs of people with developmental disabilities in their state or territory. Councils are committed to advancing public policy and systems change that help these individuals gain more control over their lives."
• State Protection & Advocacy Systems (P&As) “…work at the state level to protect individuals with developmental disabilities by empowering them and advocating on their behalf. There are 57 P&As in the United States and its territories, and each is independent of service-providing agencies within their states.”
• University Centers for Excellence in Developmental Disabilities Education, Research, and Service (UCEDDs) are affiliated with universities and "...receive a discretionary grant that is awarded to interdisciplinary education, research, and public service units of universities, or public or nonprofit entities associated with universities. AIDD funding is used to support the organizational foundation of UCEDDs, which allows the grantees to pursue other sources of support to conduct various activities. UCEDDs leverage funding from a variety of sources, including federal, state, and local agencies; private foundations; donations; and fee-for-service earnings."
• Projects of National Significance (PNS) ",,,focus on the most pressing issues affecting people with developmental disabilities and their families, creating and enhancing opportunities for these individuals to contribute to, and participate in, all facets of community life." 
• Family Support Programs are designed to "...promote and strengthen implementation of comprehensive state systems of support services for family members providing care. Congress first allocated funds directly to the program beginning in 2008, although PNS funds had been used for Family Support initiatives in prior years."  
• Direct Support Workforce is a program included in the DD Act "...to increase the workforce serving people with developmental disabilities." However, Congress has not provided direct funding for this program. "...PNS funds have been used for an online training course for direct support workers, the College of Direct Supports, which is used as a resource by agencies and states."

One problem with the DD Act of 2000 is that, although the law was scheduled for reauthorization in 2007, Congress has not taken a close look at it in fifteen years. Reauthorization is an occasion for Congress to review, investigate, and hold hearings on federal legislation to determine the effectiveness of the law, whether it is achieving the desired effects, and whether it should  continue as is or be changed and improved. It is also a chance for people directly affected by the law and the general public to participate in advising Congress on their experiences and recommendations for change. Instead, the DD Act remains unchanged, while appropriations are approved every year without the benefit of more intensive scrutiny and  oversight. 

For detailed information, see:

• The Developmental Disabilities Assistance and Bill of Rights Act 
• The DD Act of 200 Final Rule: The rule making process for implementing the DD Act of 2000 began in 2008. The opportunity to comment on the Rule closed in September 2008, but the final rule did not gain approval by the AIDD until 2015. [To be clear, anyone can comment on any government policy whenever they choose to do so. The formal comment period is a time in which there are specific requirements for government agencies to consider comments from the public and respond to them.]  It is hard to tell if this delay was because of the controversy surrounding some of the DD Act programs or other factors within the administration of the Departmcent of Health and Human Services.  
• DD Act Rule Toolkit: More information on the implementation of the DD Act Rule and the network of DD Act programs and “Technical Assistance Providers”.

Coming soon: The definition of Developmental Disabilities and the much overlooked Bill of Rights for people with developmental disabilities.